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| Hayley Okines with brother, Louis |
The teenager who won the nation’s hearts while suffering from rare premature ageing disorder progeria, which gave her the body of a 104-year-old, died on Thursday.
Just hours earlier she had blown a final kiss goodbye to her mum Kerry in hospital, promising to get some much-needed rest.
Speaking for the first time since Hayley’s death, grieving mum Kerry said: “As she lay in her hospital bed I made her promise me she would get some sleep so I could bring her home the next day.
“And she whispered, ‘Promise’.”
It was the final word 17-year-old Hayley spoke. An hour later, holding her mother’s hand, she took her last breath.
Earlier in the day courageous Hayley had been allowed home to Bexhill, East Sussex, one last time after begging doctors to let her out of hospital where she had been battling pneumonia for two weeks.
There she relaxed with dad Mark, brother Louis, 12, sister Ruby, nine, and her beloved puppies Molly, Dolly and Angel.
Kerry, 41, said: “After nagging the doctors Hayley was finally allowed out of hospital.
“She sat on her usual spot on our sofa in the front room. She was really frail and on oxygen so she couldn’t speak much. However, she made up for that by smiling.
“She was so happy and it was such a precious time. Of course Molly, Dolly and Angel were delighted Hayley was back.”
The family had no idea it was the last time Hayley would be home.
At 5pm Kerry and former husband Mark, 54, drove Hayley back to the Conquest Hospital in nearby Hastings.
Kerry recalled: “We settled Hayley back into bed and we even managed to watch Masterchef together.
“Mark was set to stay the night with her while I drove back home with Ruby. As I went to leave she blew me a kiss.
“And I said if she could get some sleep, then hopefully she could come home again the next day.”
But minutes later Mark called Kerry to say she should return urgently to hospital. “He said it was serious so I turned the car around,” Kerry said.
“But it was only when I got back to the hospital and saw Hayley, and how ill she was, that I realised the time had come.”
Telling of those heart-rending final moments at her daughter’s bedside, she said: “Mark was on one side and I was on the other. I told Hayley I loved her and how proud I was of her.”
Kerry’s mum Pam had told her Hayley had confided in her final weeks that she was too frightened to go to sleep.
But as she watched her daughter struggling, she told her: “If you need to rest, if you need to go, then that’s OK.”
Kerry adds: “She took four or five breaths and she was gone.”
Until falling ill with pneumonia two weeks earlier, the teenager – who won the hearts of millions with her bravery – had been living life to the full.
She was just two when diagnosed with the disorder, which is so rare there are only 125 known cases worldwide, according to the Progeria Research Foundation.
Doctors warned her parents she was unlikely to live beyond the age of 13 – but Hayley defied their predictions after undergoing pioneering drug treatment.
She wrote two autobiographical books – Old Before my Time, when she was just 14, and the recently published Young at Heart – and won a place to study media at college, hoping to fulfil her dream of becoming a celebrity journalist.
Proud mum Kerry told the Sunday Mirror: “She excelled at writing, getting distinctions in all her exams. She was so well she hardly ever took a day off.”
But Hayley knew only too well that time was running out and she made a bucket list of things she wanted to do before she died, and set about ticking them off.
She travelled the world, swam with dolphins, appeared in a series of Channel 5 documentaries and met Prince Charles, Kylie Minogue and Justin Bieber.
However, in her last three months Hayley had begun to feel tired.
“She’d say during the day she was going to have a short nap. It was unlike her,” Kerry said.
Nevertheless, when Hayley complained of a sore throat two weeks ago, Kerry was not unduly worried.
“I just thought it was one of the usual bugs doing the rounds. The doctor prescribed antibiotics and we thought she would get better.”
But a week later her condition worsened and she was admitted to hospital where pneumonia was diagnosed.
She fought the illness but her frail body finally lost the battle. Kerry said: “She was beating that infection but blood tests revealed her blood marrow wasn’t producing enough white blood cells – the cells which fight infection.”
Doctors planned more tests but Hayley died before they could be carried out. “Even her consultant was shocked she went so suddenly,” says Kerry.
“I often used to wake up wondering, ‘Is this the day?’
“We knew Hayley had a limited time to live, but her death’s still been a terrible shock. Nothing could have prepared me for losing Hayley. Her death has already left a massive hole in our lives.
“We were a typical mother and daughter – we fought sometimes, but we were also so close. Right now I don’t know how I will cope without her.”
Describing Hayley’s last visit home, dad Mark said: “She came home for an hour. She saw her puppies, she saw her little brother Louis and sister Ruby. I think she wanted to come home and say goodbye to everyone.”
Kerry added: “In some ways I feel relief because Hayley’s death was so peaceful.
“And I feel so lucky to have had Hayley. Yes, she had progeria, but that made her who she was. Because of it we also had the most wonderful fulfilling life together.
“Hayley had a fantastic life and I feel privileged to have been a part of it.”
She added: “Hayley’s brother and sister are lost without her and will definitely miss her bossing them around.”
Kerry announced Hayley’s death in a brief but emotional post on Facebook on Thursday night.
It read: “My baby girl has gone somewhere better. She took her last breath in my arms at 9.39pm.”
Tens of thousands of well-wishers left messages of condolence for the family, and Kerry said she has been boosted by all the tributes: “Those wishes of support are really helping me.
“It’s wonderful to know Hayley touched so many people.”
Kerry said she never spoke to Hayley about her death or preferences for a funeral, as it would have been too upsetting for both of them. But the family are meeting funeral directors on Tuesday to make plans for the perfect send-off, which will centre around Hayley’s favourite flowers – lilies, roses and sunflowers.
Kerry then hopes to have her daughter’s ashes made into a diamond ring.
She said: “The thought I will never see Hayley again is unbearable. But every time I look at that ring, I will know she is still somehow with me.
“And knowing she is with me will bring me so much comfort.
“I am so glad that when the end came Mark and I were both with her. And she died with both of us there, knowing how much we loved her.”
Credit: Dailymirror
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